A Blog For Those Getting Used To Life With A Stoma

Category: Mental Health

I’m sorry I didn’t tell you all of this sooner, and I’m sorry for putting you through so much worry and heartache this year. And I want you to know, just how grateful I am. Not just for everything you’ve done, not just for becoming my carer, and letting me move back home as you waited on me hand and foot; but for being my mum. For being there, even when you feel as though you can’t even be there for yourself.

You always put me first, you always forget about your own illness and focus on everyone else. You’re my biggest inspiration in life, and the best person I know.

When I see you cry, and shout and hurt like you do, unable to escape your thoughts, I never know what to do. I don’t know whether to hug you, or just sit and cry with you. I’ll never be able to understand what you fight against every day of your life, and I won’t pretend to, but I’ll always be here. You’ll always be my favourite person in the world, my best friend.

I’m so sorry for scaring you so much with my illness, and I want you to know that I’m not going anywhere. I want you to know that all of us kids look up to you. We all wish to be just an ounce like you; so loving, so caring, so beautiful.

I hate the pills you’re forced to rely on, I hate that there’s no way out for you. But I’m thankful that you’re fighting. That you’re here. I know I can’t magic up an exit and make everything okay, but hopefully we can find a side door. I hope you see how much you’re loved and how proud I am to be able to call you “mum”. I hope you realise how much you continue to amaze me, each and every day. I hope you know that people that haven’t nor even tried to comprehend the battles you face on a daily basis are irrelevant. They don’t need to understand because they don’t matter. What matters is you.

I hope you can read this and feel good about yourself, just for a moment. I want you to read this whenever you feel down, whenever you feel like you’ve just had enough. I want you to know that you are the best person I know, and I would do anything to just turn your emotions around forever. To blank your mind and fill it with happy thoughts. I’ve always got your back, no matter how many times you tell me I need to clean my room. I love you mum.

Some of you may know that from 2010 to 2013 I suffered quite badly with bulimia. I was always of average weight, so no body really looked at me any differently or noticed. It ended up getting quite bad, to the point where I was hospitilised at the end of 2011 with pneumonia and a collapsed lung – caused by the vomit that had been trapped in my chest area from purging all the time. I made things worse in the hospital by refusing to eat, with them nearly having to enforce tubes to ensure I was being fed. Of course, I realised I’d have no control over what they were feeding me, so I reluctantly agreed to eat – at least that way I’d know how many calories I was taking in.

I had a chest drain put into my right lung which drained 2 litres of fluid. I was put into an intensive care unit over in Southampton (a far way from home at the time) and my parents had to sell their vehicles to afford to be with me every day. I look back and can’t believe how selfish I was.

When I eventually left the hospital, I returned home and really isolated myself. I was housebound for a while, missed out on lots of college and also lost a few friends along the way. It was only then that other symptoms started appearing, such as my skin becoming absolutely awful, my nails brittle, and clumps of hair falling out all over the place. I remember blocking up a few hoovers! I have lovely thick hair too, so that for me was the worst of the lot.

Even though all of this had happened, I couldn’t stop purging. I carried on throughout relationships, causing people unneeded stress. I feel guilty for putting these issues onto other people.

With the support of my family I gradually began to stop, I’m not sure why, I think I just saw how much I’d hurt everyone and how much everyone had done to try and help me. Me and my boyfriend at the time had broken up because of the amount of pressure I’d put on him, and I think I realised I was just pushing people away. I didn’t want to be selfish anymore. It didn’t completely stop, but things got a little better.

It didn’t stop until I met Angelo, who I have been with for 2 years now. I opened up to him about everything and he supported me and made me swear I wouldn’t do it again. I really, really liked him at the time. I knew I loved him so early on. And I didn’t want to lie to him.

Of course, it wasn’t as easy as “ok I won’t do it, I promise” it was a long battle. A battle I can finally say I have overcome. Angelo really appreciated my body and I wasn’t used to that. He started making me feel better about the way I looked. And to this day, I’ve kept my promise. There have been times when I’ve wanted to, when I’ve been close. But I won’t break a promise.. ever.

Anyway, there’s a few things that I went through with people not believing me, laughing at me, and actually vocally attacking me because I wasn’t stereotypically ill. And, of course there’s more to the story on a much deeper level, but I don’t really think it’s necessary to go into detail – I thought I’d just give you the basic idea, before I wrote the 7 things you may not know or understand about bulimia nervosa. So, here’s a few things you may want to take in. Because your actions may affect somebody suffering, because you don’t fully understand. Why push people further away from opening up when you have the chance to help?

1. Bulimics aren’t necessarily skinny. A lot of sufferers are more of an average weight. If somebody chooses to open up to you about their eating disorder, don’t be so quick to judge. In fact, don’t judge. I hate how people seem to think that you have to be extremely underweight to have an eating disorder.

2. It is not all about weight. It can be about control. For some people, food can be the one thing you are able to control when you feel everything else in your life is happening unwillingly. It can be about self esteem, it can be caused by trauma. There are plenty of different reasons that result in bulimia nervosa.

3. You don’t always purge after every meal. I can’t speak for everyone, but being bulimic doesn’t necessarily mean to purge every meal. Purging can be a way of relieving guilt, so you may just purge the foods you consider to be bad.

4. You can’t always spot it. Media tells you we have bad teeth from all of the vomit and yellowing skin — basically doing everything they can to shock you. I suffered for years and have white teeth and nice skin. I’m sure in the very long run it may have been different, but it’s not always the case. Don’t just look for these signs. And don’t use them as fact. If somebody chooses to speak to you about it, please don’t disregard the seriousness of it just because they don’t fit the “symptoms”.

5. Bulimia can cause a variety of different illnesses. When I was in school I was hospitalized with a collapsed lung and pneumonia. This was actually caused by vomit that had gotten stuck in my chest area for quite some time and had spread infection, and caused one of my lungs to collapse. When I finally spoke out about what had happened, no body believed me. I even had one girl at a party come up to me and tell me “your words offended me, because you have NO idea what an eating disorder is” alongside other people nastily backing her up. They didn’t believe me because I wasn’t extremely underweight, and I they obviously had no idea that my collapsed lung and pneumonia was caused by me being bulimic for years.

6. Bulimic people aren’t vain. I didn’t throw up because I lead a life of vanity. I threw up because I felt it was the only control I had in my life at that point. I did it because I was angry at my body… I was angry at myself. I threw up because I believed it would eventually make me happy.

7. It’s not as simple as “can’t you just stop?” Recovering from bulimia isn’t just about not throwing up your food. It’s about learning how to eat again, how to eat in moderation without binging, how to socialise with friends and family, how to eat in front of other people, how to prove to your loved ones you’re not using the bathroom or running the shower just to purge.

It’s 1:30am and I’m in a taxi crying my eyes out after a night out with friends. Well, after somewhat an evening out. I’d planned to stay back at my friends, after the usual night out ended around 4am. But here I was, texting my boyfriend in a state, to meet me outside to give the taxi driver the money.

I’d had a bit to drink and so was a tad more emotional than I normally would have been. But some things got to me so badly last night that all I wanted to was leave, come home, crawl under my duvet and sob myself to sleep.

You see, last night, just like the last time I went out, I had more people approach me about my ileostomy bag. I know what you’re thinking. Well you publicly write about it, what do you expect? But it was different. It wasn’t people addressing my ostomy. Or my blog. The complete focus was on the difference in me. I have been quite confident in myself since the surgery, and I have learned to acknowledge the fact that everybody deals with things differently. But last night, I was sat down, and told by people I didn’t know, that “I shouldn’t let people bully me just because I’m different”. And that the people “judging” me aren’t worth it.

I of course stopped them right there and then and told them I would never let somebody bully me. That my ostomy bag saved me life. And whoever had a problem with it obviously had their own issues to deal with.

But, it also angered me. Whether it was meant in a nice way or not – could I not have just been left alone to enjoy my night? I’m sick and tired of going out in public places with people my age, to be patronized and questioned.

I need to be completely 100% honest with you. Please listen to me when I say this. I do not want anybody’s pity nor sympathy. The best thing anyone can do for me is carry on supporting me by reading and interacting with my blog. My ostomy bag does not define me and I refuse to be the subject of sympathy needed for other people to feel better about themselves. I am not looking for somebody to tell me that other people’s opinions don’t matter. Convincing themselves that any opinion other than my own is a negative one.

After this conversation ended, I dragged my friend outside with me to just take a breather. I didn’t want it to effect my night. Of course, talking about it with my friend helped. But I did get upset whilst doing so. It’s hard to talk about something that effects you so personally. It’s hard to keep a brave face 24/7 and act like it’s just water off a ducks back. Because it’s not. It’s hard. It’s really hard. What has happened to me could have been completely emotionally, mentally and physically traumatizing. For the first part anyhow. But it hasn’t been. Because I haven’t let it. But that doesn’t mean that I don’t feel low sometimes. That I don’t think about those nights on the ward, crying myself to sleep. Like remembering how much I despised myself at one point doesn’t leave me with panda eyes and a runny nose.

I spoke about all of this with my friend. Because I needed to. And I guess alcohol just gives you complete word vomit and everything you try to keep trapped in and concealed to create this false mask of positivity just disappears and you’re left stuck in this bubble of vulnerability. My friend was very understanding, of course. But even though we’re very close, everything I’d said came as a complete surprise to her. She’d always seen me so much stronger.

It felt like I’d had a little bit of a break through until somebody decided to spoil the moment. By butting in that at my age, I had no idea about life. She laughed at me, and shouted very publicly that “hundred’s of people have ostomy’s” that I should get over it, because “you have no idea what life’s about”.

Completely full of rage, I left the club. I couldn’t do it. I could not bring myself to justify this womans behaviour. Could she not see I was upset? Was she invited to listen in to our very personal conversation? Why did she feel the need to do that? And who the hell is she to tell me after being faced with death and making a positive out of an awful situation, that because I was young, I had no idea about life. I can’t even begin to comprehend her actions. I think it was absolutely disgusting. I am entitled my own emotions. I have every right to feel upset about something that at one point had such a huge effect on me. It should not be compared not dismissed because of my age. This woman was much older than me, and as I left, went on to talk about her life experiences. If she’d experiences awful thing herself then how can she judge others on what they do and do not know?

I would never compare my experience to someone else’s. Because as I’ve said before, everybody deals differently. No matter how many people have experienced the same. Everybody maintains a different mentality. It is not a competition. And your emotions are certainly not determined by the percentage of the population in the same boat as you.

Last night I lost faith in both the older and the younger generation of today. I hope to see more compassion in the world as time goes on. Because that is what life is about. Loving, listening, accepting, embracing, learning and understanding. Living life so sourly is such a waste of the time we’re given. And you never know how long we’re going to get.

Things have been pretty difficult for me the past few months, emotionally, physically and mentally. Not just because of my surgery and not just because of the changes my body has gone through, but things far deeper that have been there for a while, I just failed to acknowledge them – or refused to. Sometimes, the easiest thing is not to talk about it. I spend my life blogging away and talking about my ileostomy, wanting to raise awareness and wanting other teens to embrace their own bodies. But I also do it for me. I do it to help myself recover. Writing about my surgery has been my therapy. It has been a way for me to acknowledge and accept what has happened. It’s not the same when the problem isn’t just affecting you. You can’t speak for another person. You can’t control what they think and do. You can’t change them and at the same time you can only make decisions for yourself.

This week it had gotten too much for me. So I’ve come away on my own for a few days, to reflect, and to breathe. Everyone needs to breathe once in a while. Sometimes it’s too hard to when you’re around another person trying to breathe at the same time. It’s almost as if you’re struggling for oxygen without even realising it’s happening.

I’m using this time to write, to plan and to attempt a few things from my bucket list. I think it’s important for me to stay busy and focused. I love this blog and I love the people reading it and I want to carry on writing for that reason.

– Although the place I’m at currently doesn’t have wifi so I am using my personal hotspot! I am SO not looking forward to my phone bill at the end of the month – help me please!

P.S – To those new reading today, or have been reading since the very start, thank you. Thank you for taking the time to read my moans and groans and babbles and spur of the moment posts. Thank you for supporting me. xxxx

It’s important to remember from time to time that we are all only human. We all have feelings and endure a series of emotions with which we may choose to express or hide. Things can effect us deeply no matter how big or small that thing may seem to another person. Physically, mentally or emotionally – things can become such a huge part of you and manage to eat you up from the inside before you get a chance to tell yourself it’s okay.

I’m not sure if I’m writing this post more for myself or other people in my situation, but either way I think it’ll make things easier in the long run. Something to revert back to when I’m having a bad day. I haven’t had many bad days so far, but when I do, they swallow me up and spit me back out again, leaving me feeling defeated.

So, the aim of this post is to pick myself back up again. And remind myself of a few things…

1. It is okay to get upset.
Everyone gets upset from time to time. If you feel you need to, cry it all out. Get it all out of your system, and start a fresh tomorrow.

2. Breakdowns signify strength.Breakdowns are you finally accepting your feelings, and actually releasing everything you feel from within – everything you so desperately tried to stop escaping. By doing this, you are facing your emotions. Think of a break down as break through.

3. You have something that makes you different, uniqueness is beautifulSure, it may not be something you’ve always wanted, but if it became the norm, would it bug you so much? You have something that not everyone in this world has. Doesn’t that make you a little more interesting? You have an amazing story to tell. Tell it.

4. It may have been a life changing experience – but it doesn’t have to change you.Being given a stoma means learning new things, being a little more careful, accepting certain changes to your lifestyle. But that’s it. It doesn’t have to change the person you are, so don’t let it.

5. Your stoma saved you
No matter how you feel about your stoma right now, always remember it’s given you a better way of life. In fact, it’s given you life. Your stoma saved you.

6. You are still able to live your life the same as anyone else
Don’t let anyone make you feel like you’re any less just because you may have to pack a few more things, or take a few more toilet breaks. And yeah, somethings may take you twice as long. But it doesn’t mean you can’t do it twice as good.

7. There are always going to be people who don’t understand, forgive them.. teach them
Some people just don’t get it. And maybe they never will get it. But it doesn’t mean they’re not willing to learn. Just because somebody hasn’t experienced it, doesn’t mean you have to create a barrier between you. Talk to them, help them understand, help them become more accepting of how the human body differentiates.

8. People that don’t accept it, don’t accept you. And you don’t have to accept that.
Of course, there are going to be people that don’t want to take the time to understand. And there are those people that will always just be a little narrow minded. Fuck them. If something so insignificant effects their state of mine, and they can’t take the time to get to know you, for YOU – they don’t matter!

9. You are strong
You have been through a massively traumatic experience, never forget the fight you once faced – never forget the strength you hold.

10. Smile – you have a reason to!
And finally, please just smile! If you’re having a bad day and wishing your stoma away, stop! Would you really want rid of it if it meant going back to the days spent on the toilet in pain? Or spending your days in and out of the hospital? Think about that. This is just one tiny part of you, and it’s a tiny part of you that means you can still be here. So smile about that.

Living with a bag on my stomach was something I did not believe I could deal with at first. Not just because of how it looked, how it felt, or because I was scared of other peoples reactions, but because I didn’t know what kind of emotional effect it would have on me. I didn’t know if it would pull me back to where I was almost 4 years ago, when I was living with bulimia. I was scared it would bring back those same feelings, that obsessive, compulsive, feeling of loneliness that fell through lack of control.

In 2011 I was admitted to hospital after one of my lungs had collapsed due to vomit being stuck in my chest. Nobody knew I suffered with an eating disorder at this time. Nobody would’ve guessed either; nor taken me seriously. I wasn’t skinny, I wasn’t ill looking. I was a normal size. Just normal. People forget to differentiate between eating disorders such as bulimia and anorexia. Bulimia for me didn’t just revolve around being skinny. Of course that was my aim, but bulimia for me wasn’t just starvation, it was bing eating eating and purging. Eating so much that I’d feel sick, trying to fill the emptiness inside of me. And then getting rid of the food I’d eaten in anyway I could. If I couldn’t control myself around food, I’d need to make sure it didn’t stay in my system. Making sure I was back to feeling empty. Because if I felt empty I couldn’t be fat. I couldn’t be angry at myself for losing control again. That empty feeling gave me back the sense of control I lost every time I binged.

I remember coming out about my fight with bulimia in 2012. I made a video for the blog I was currently writing. I talked about the effects it had had on my body, my family, and my social life. Of course, many people wrote to me and congratulated me on speaking out about it, others wished me well. Lots of people that had known me in person, had seen me in full length and had not taken the time to look deeper, judged me, mocked me, and attacked me for “talking about something I knew nothing about”.

I could not deal with knowing that people were talking about my experience in such a negative way. I deleted the video a few weeks later. I had never felt so alone. Luckily, I had a couple of close friends at the time, that knew what had happened and were there for me. But it didn’t stop me being scared of what others were saying. Feeling people were looking at me when I went out. I felt like I couldn’t talk to anyone. I felt like people would just laugh at me if I tried. I continued to struggle even after the video, after my hospital recovery, because I still felt alone. I was made to feel embarrassed for what I had gone through, and nobody should be made to feel like that. It wasn’t until I met my boyfriend that things began to change for me.

Living with bulimia is one of the loneliest experiences I have had in life. My life revolved around a pattern of binging and purging, weighing myself daily, starving myself, and looking in the mirror and seeing nothing but ugliness. I felt an aching need to change. I needed to be skinny, that way I’d like myself more. I’d feel better. I hid this from my family and my friends for two years. I don’t know how I kept it up. It was ruining me. I’d cry every night, feeling overwhelmed with guilt from the amount of food I’d thrown up just moments before. I was scared I’d never like myself. I was scared it would never stop.

And this is how I first felt with my bag. I was scared of being scared. I was terrified I’d hate myself again. After not purging since the promise I’d made to my boyfriend in 2013, I had been free. I didn’t want to go back to feeling trapped.

The first two weeks with my ileostomy bag were kept secret. I didn’t tell anyone. When people asked why I had been in hospital for so long, I avoided it. I told them I’d just had a little surgery. I was scared of that judgement I experienced those few years ago. But dealing with it on my own was not dealing with it at all. It was ignoring it. It was singling myself out amongst other people my age. Why should I hide my scars? Why should I be ashamed of the bag that saved my life? Why should I be afraid of other peoples judgement?

I decided to speak out and I’m glad I did. It has allowed me to accept what has happened. Writing has become my therapy. It has been an escape. It has also turned into such a positive thing. I’m finally helping others. I’m finally speaking out and I’m finally gaining the confidence I always longed for.

Speaking out this time, I had such a completely different response. I received nothing but positivity. What I don’t understand is…why? Why is it that it takes me having something visible on my body for people to be there? For people to take time to try and understand? For people to sympathize?

I’m proud of my ileostomy bag. I’ve fought to not let myself get dragged back down. I’ve kept my head high, and I’ve realised that I’m lucky to have the body I do. I’ve put my body through so much harm throughout my life, and it’s time I looked after it. It’s time I appreciated it. My scars show my strength, and my bag is something I wear with pride. It saved my life.

It’s funny how we judge people by what we see. Just because I wasn’t stereotypically skinny, I was an attention seeker. Not somebody who had really struggled in a fight against herself. And just because we don’t have wheelchairs, IBD sufferers are glared at for using disabled toilets. We are known as having a “hidden disability”. Why don’t we ever realise that maybe there’s more than what meets the eye?

It’s important to know that it’s okay to cry sometimes. It’s okay to to stop feeling strong and it’s okay to be open with your emotions. An ileostomy bag is something people have to come to terms with in their own time; it’s not something that can be forced nor rushed. Always remember that you are human. Feeling confident with your bag is great, it’s a great boost for others as well as yourself. That level of positivity shows that you can get through whatever life throws at you.

I broke down last night. I think a lack of sleep mixed with various other overwhelming events has taken it’s toll on me. The level of positivity I have managed to maintain has helped me ignore any negativity floating around in my brain, but last night I was unable to escape that. But today, I feel good. I feel a sense of relief that I have pushed that pessimism out of my body.

Some people see breaking down as a sign of weakness, but for me it’s the opposite. Breaking down is being true to yourself. It is letting yourself realise that there is more than what meets the eye. It is knowing that you are feeling. And what you are feeling is real.

Ileostomy surgery is a traumatic experience, but it doesn’t have to be a life-changing one. It’s understandable to spring between different emotions, everybody deals with things differently. It is normal to be scared, it is normal to feel down and it is normal to question how you’re feeling completely.

It’s hard to deal with things when you feel the subject itself is pushed into such a hidden agenda, but it doesn’t have to be that way. There is so much support out there. Sometimes it’s easier to talk to somebody you don’t know, somebody going through the same experience, somebody with a better level of understanding. It’s more comforting than isolating yourself and your bag. Knowing that there are other people out there just like you is one way of stepping forward. Helping yourself through other people is a great way to build yourself up again.

I have listed below various sites and charities that represent others sharing our experience. Talk to them. Be there for them, just like they will for you.